October 26, 2009

Letters from Grassley: National Alliance for Mental Illness -- Now We Want Records from State Chapters

The National Alliance for Mental Illness (NAMI) is one of the nation’s best organizations. Founded by relatives (parents and spouses) of those with mental illness, over the years they have been perhaps one of the most effective groups in helping those relatives and patients of mental illness deal with the disease and its some times life threatening or at least earth shattering effects.

Consequently, some of the funding for projects NAMI works on came under investigation in April when Senator Grassley (R-IA) began one of his endless letter writing campaigns. Recipients of such letters included influential disease and patient advocacy organizations. As reported by Gardner Harris in the New York Times, Mr. Grassley’s investigation found that “a majority of the donations made to the National Alliance on Mental Illness, have come from pharmaceutical manufactures in recent years.”

The NYT further reports that documents they obtained from Mr. Grassley’s show that “pharmaceutical manufactures from 2006 to 2008 contributed nearly $23 million to the alliance, about three-quarters of its donations.”

These numbers from the pharmaceutical industry however only break down to about 50% of its annual $10 million to $13 million budget. So if Mr. Grassley proposes such donations are wrong, who is going to pick up the other half, especially if programs like Medicare already want to cut mental health payments?

NAMI’s executive director Mr. Fitzpatrick noted in his interview that NAMI has already begun “posting on its Web site the names of companies that donate $5,000 or more.” In response, Mr. Grassley offered his support for such actions and hopes NAMI’s example will bring more disclosure to patient groups.

But in the keeping to the theme of no good deed goes unpunished and acting like the class bully.According to a press release by the Senator which included the NY Times article and at the prompting of Paul Thacker, Senator Grassley’s hatchet man, the Senator has sent letters to all the state chapters of NAMI asking if they received any funds from industry. So what is the Senator planning to with the information he collects from the state chapters announce that they too have solicited help. Perhaps we are missing something in believing that this was a democracy, where people and small groups have the right to association, as outlined in the first amendment.

The question should be raised by state chapters of NAMI as to why is a Senator from Iowa sending letters to patient group chapters in New York or Texas, is this really in the Senators jurisdiction.

Also rather than simply respond the state chapters should raise this issue with their local senators, who I am willing to bet are not as amused by the Senators far reaching tactics as the New York Times writer.

The shadow of this investigation, unlike Mr. Grassley’s usual crusade against researchers, has a much closer impact to the populations directly affected: the people who are either afflicted with serious illnesses themselves or have family members who have been affected.

As the article itself notes, “many members join the groups in the hope of making sense of their misfortune by helping to find a cure or raising awareness of a disease’s risks and frequency.” Part of raising awareness and finding a cure means fundraising for ways to continue research and to carry out studies.

Just because these treatments are found in corporate laboratories does not make the way these illnesses have affected the lives of patient groups any less real.

In fact, direct patient and family interaction with industry and the financing of public service campaigns suggest that industry is making patients their number one priority. There is no inherent conflict in such groups seeking out funding for cures and research for industry while lobbying for changes in legislation. It is merely a commonality of interests.

On one side, patient groups need new treatments and research to help fight mental illness and treat sick patients. Another side to this goal is to create legislation that creates funding opportunities and governmental regulations that allow for such groups to provide services to patients and share their research as vastly as possible.

As a result, the participation and support of industry is essential and, while it is certainly true that industry should not fund everything, Mr. Grassley and others have yet to offer alternative ways for these groups to continue to exist.

Attempts to underscore NAMI’s relationship with industry were also made at the organization’s annual gala last week. Critics sought to label such an event conflicted because Dr. Stephen H. Feinstein, president of the alliance’s board, thanked Bristol-Myers Squibb, the pharmaceutical company, who has sponsored the dinner for the past five years. (What are they supposed to do, not thank their supporters, perhaps he should have said this “because Senator Grassley and the New York Times doesn’t like the fact that we accept support from wherever we can get it, we therefore cannot thank you.” Get real!!!)

The New York Times also alleges from the documents that pharmaceutical companies offer “direct advice about how to advocate forcefully for issues that affect industry profits.” They make such a claim based on the fact that pharmaceutical companies are urging states not to limit access to mental health treatment.

While it may seem that profit motives are at the forefront for such a claim, Mr. Grassley and critics fail to realize that companies are trying to keep more treatment options and services available for patients. What is the alternative? Who is going to lobby to keep treatments available to treat mental illness? When 45 million more people are added to health insurance how does Mr. Grassley propose we treat all of their mental illnesses?

Industry funding has helped the group fund weekly meetings in 300 locations to allow people suffering from mental illnesses to come together and discuss their problems, something NAMI could not do alone. In fact, $250,000 from AstraZeneca to a variety of NAMI chapters has helped NAMI host fundraising walks and educational outreach efforts that have raised awareness and brought people together.

Ultimately, industry funding for NAMI is the most direct source of funding for patients one could ask for. The money from industry allows NAMI to fight for better access to mental health treatments, something the organization would do “even if they had no relationship with pharmaceutical companies.” The fact that they have more financial support to create fundraising campaigns and raise awareness just makes their voice louder. Moreover, the impact industry provides shows that NAMI and industry are “committed to improving health through partnerships with nonprofit organizations” and that “includes striving to ensure people can access our medicines through formularies managed by state Medicaid agencies.”

We challenge the Senator to leave these good people alone, and pick on someone your own size, this is not ACORN, these folks are not taking millions in Federal funds but are boot strapping to their organizations to help patients and families.

With Medicare and Medicaid losing billions to fraud and the federal budget running trillion dollar deficits, perhaps there are better things for the Ranking Minority Member of the Senate Finance Committee to be doing with his time.

These families disparately need our help, perhaps a bill to support mental health groups like NAMI is in order.They deserve more resources not less.